Time has flown by, Alex is 7 now and has fought a big fight for the last 28 months. Our last scan in April of 2012 showed only two tumors, one by the heart and one by the arorta. His Dr. and I were very excited as they were small. We did cytoxin and rapamycin (Spelling) till August and did another scan and it showed more tum ors in the bronchi airway. We went in with a camra to see if we could remove any and we were not. There was tumor wrapped around the main blood vessel of the left lung and he had more tumor growth in the esophagus. We decided to do radation to hopefully slow the growth of the tumors in his bronchi and esophagus. We did a scan in October 2012 and sadly we found that he had more tumors one on the top of each lung and one on the bottom of each lung. I have dubbed it the four corners of the lungs. Alex knows everything and has opted out of treatment. He asked that he just not be in any pain.
My eldest son and I just started a foundation that is non profit in honor of Alex and also to carry on in his memory after death, as Alex is alway's thinking of others. I will reveal all of the information when it is up and going.
This DSRCT is the devil for sure, but no matter what fight hard and don't give up.
My name is Wendy Hall, and my son Alex Onkle was diagnosed with Desmoplastic Small Round Cell Tumor cancer (DSRCT) on July 27th 2010. Alex is now five years old and fighting for his life. In this nine month journey out of all the emotions I've felt, I have been able to overcome all but one, FUSTRATION. This is where the fustration ends and the blog begins.
My heart goes out to you, Wendy. You are a brave and wonderful Mama. I am so sorry that Alex is at this stage in his battle. I love how you said that Alex is always thinking others. That is so precious...how a child who is suffering and going through so much trauma in his young life can still care about others. My son Matthew, age 39, is still fighting his battle with DSRCT. His fight intensified this past month and he is undergoing another very aggressive round of chemo. We are praying that it will hold off the growth of this demon disease and allow him more time to enjoy his family, his wife Nicole and his 13 yr. old son, Noah. Praying for you and your family today. Thank you for sharing this with us. (((hugs)))
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